Adult Inpatient Services in Pediatric Hospitals: A National Mixed Methods Study.

OBJECTIVES: Some pediatric institutions have developed adult inpatient services to enable quality care of hospitalized adults. Our objectives were to understand the characteristics of these adult inpatient services in pediatric hospitals, barriers and facilitators to their creation and sustainability, and patient and system needs they addressed. METHODS: An explanatory mixed methods study was conducted using a distribution of an electronic survey followed by targeted semi-structured interviews of directors (or designates) of adult inpatient services in US pediatric hospitals. The survey identified institutional demographics, service line characteristics, and patient populations. An interview guide was created to explore survey findings and facilitators and barriers in the creation of adult inpatient services. Interviews were conducted after survey completion. A codebook was created using an inductive thematic approach and iteratively refined. Final themes were condensed, and illustrative quotes selected. RESULTS: Ten institutions identified as having an adult inpatient service. Service staffing models varied, but all had dually trained internal medicine and pediatrics physicians. All participants voiced their respective pediatric institutions valued that these services filled a clinical care gap for hospitalized adults adding to whole-person care, patient safety, and health system navigation. CONCLUSIONS: Adult inpatient services in pediatric institutions have been present for >15 years. These services address clinical care gaps for adults hospitalized in pediatric institutions and use specialized internal medicine and pediatrics knowledge. Demonstrating return on investment of these services using a traditional fee for service model is a barrier to creation and sustainability.

Diagnostic Accuracy of Primary Care Clinicians Across a Statewide System of Autism Evaluation.

OBJECTIVES: To evaluate the diagnostic accuracy of the Early Autism Evaluation (EAE) Hub system, a statewide network that provides specialized training and collaborative support to community primary care providers in the diagnosis of young children at risk for autism spectrum disorder (ASD). METHODS: EAE Hub clinicians referred children, aged 14 to 48 months, to this prospective diagnostic study for blinded follow-up expert evaluation including assessment of developmental level, adaptive behavior, and ASD symptom severity. The primary outcome was agreement on categorical ASD diagnosis between EAE Hub clinician (index diagnosis) and ASD expert (reference standard). RESULTS: Among 126 children (mean age: 2.6 years; 77% male; 14% Latinx; 66% non-Latinx white), 82% (n = 103) had consistent ASD outcomes between the index and reference evaluation. Sensitivity was 81.5%, specificity was 82.4%, positive predictive value was 92.6%, and negative predictive value was 62.2%. There was no difference in accuracy by EAE Hub clinician or site. Across measures of development, there were significant differences between true positive and false negative (FN) cases (all Ps < .001; Cohen's d = 1.1-1.4), with true positive cases evidencing greater impairment. CONCLUSIONS: Community-based primary care clinicians who receive specialty training can make accurate ASD diagnoses in most cases. Diagnostic disagreements were predominately FN cases in which EAE Hub clinicians had difficulty differentiating ASD and global developmental delay. FN cases were associated with a differential diagnostic and phenotypic profile. This research has significant implications for the development of future population health solutions that address ASD diagnostic delays.

Identifying Children With Medical Complexity for Care Coordination in Primary Care Settings.

Characteristics of a cohort of 98 children with medical complexity (CMC) insured by Medicaid were identified within an urban/rural pediatric practice for embedded nurse care coordination. Ninety percent of enrolled children fit the predefined requirements of requiring 3 or more subspecialists for their care. Neurology, orthopedic surgery, endocrinology, and gastroenterology were the most frequent subspecialists engaged in longitudinal care. The expected neurodevelopmental disabilities (cerebral palsy, spina bifida, Down syndrome, and other complex syndromes) were found in 64% of the patients. By applying a secondary definition to include children with complex neurodevelopmental or genetic syndromes, 98% of the patients were considered to be medically complex. The use of reliable and adequate criteria to identify medical complexity is important to determine which patients would most benefit from care coordination services, and our method was deemed successful.

Care Coordination for Children with Special Healthcare Needs Anticipating Transition: A Program Evaluation.

PURPOSE: Nearly 20% of U.S. children have special healthcare needs (CSHCN). Difficulties experienced with navigating the array of services for these children has highlighted the value of care coordination to improve care, reduce costs and increase satisfaction. This study evaluated the services delivered within a care coordination program at a transition consultation center for CSHCN. It also compared the advancement of youth by age group toward graduation criteria. DESIGN AND METHODS: Using a program evaluation method, data were collected via a retrospective chart review. The convenience sample included clinical records from 100 patients aged 11-22 who had a chronic disease or disability. RESULTS: The comparison of services for those with diagnoses of autism spectrum disorder, cerebral palsy and Down syndrome were uniformly high in supporting primary care and health care financing. Medicaid waiver assistance was provided more frequently to younger adolescents while older adolescents more commonly received support in all other graduation criteria, including primary and specialty care, healthcare financing and decision-making supports. CONCLUSIONS: Youth served in a transition care coordination program receive a high volume and broad array of services. There are some variations in the types of services by diagnosis and level of support need. Older youth show greater advancement toward graduation criteria. PRACTICE IMPLICATIONS: This in-depth chart review provides a valuable description of the activities of care coordinators serving CSHCN enduring transition. It enables development of targeted strategies for building care coordination programming and sets an example for the design of future research studies on this topic.

Associations Among Referral Concerns, Screening Results, and Diagnostic Outcomes of Young Children Assessed in a Statewide Early Autism Evaluation Network.

OBJECTIVES: To examine associations between referral concerns, screening results, and diagnostic outcomes for young children evaluated across a statewide primary care network for early screening and diagnosis of autism spectrum disorder (ASD). STUDY DESIGN: The Early Autism Evaluation Hub system was developed to increase developmental screening and improve access to timely ASD evaluations in local communities. In 2019, 858 children (ages 18-48 months; 40% diagnosed with ASD) received ASD evaluations across 12 Early Autism Evaluation Hubs. Data on primary care provider (PCP)- and caregiver-reported referral concerns, Modified Checklist for Autism in Toddlers, Revised with Follow-Up (MCHAT-R/F) and Ages and Stages Questionnaire, Third Edition (ASQ-3), and diagnostic outcome were collected. RESULTS: Among children evaluated, there was low concordance between PCP and caregiver referral concern. Although a positive MCHAT-R/F screen was associated with PCP but not caregiver-reported ASD referral concern, there was a significant linear relationship between MCHAT-R/F raw scores and both PCP and caregiver ASD referral concern. A different pattern of ASQ-3 delays was found to be associated with PCP-reported as compared with caregiver-reported ASD referral concern. Finally, PCP-reported ASD referral concern, positive MCHAT-R/F, and ASQ-3 Communication and Personal Social delays were associated with a significantly higher likelihood of subsequent ASD diagnosis. CONCLUSIONS: Understanding how community PCPs use surveillance and screening data, the extent to which PCPs and caregivers have shared understanding and engage in collaborative decision-making about evaluation referral, and how these factors relate to diagnostic outcomes has the potential to impact educational efforts for both PCPs and caregivers of young children, as well as inform the development of more efficacious early identification approaches.

Family-Centered Care Coordination in an Interdisciplinary Neurodevelopmental Evaluation Clinic: Outcomes From Care Coordinator and Caregiver Reports.

Children with neurodevelopmental disabilities experience many unmet healthcare needs. Care coordination is one critical solution to addressing the substantial strain on families, local communities, and the larger healthcare system. The purpose of this study was to implement a care coordination program in an interdisciplinary pediatric neurodevelopmental evaluation clinic and examine care coordinator and caregiver outcomes. Following neurodevelopmental diagnosis, children were provided with either care coordination (CC) or care as usual (CAU). For those receiving CC, the care coordinator documented family goals and care coordination activities, outcomes, and time spent. Caregivers in both groups completed a survey measuring access to needed services and caregiver stress and empowerment following their child's evaluation (T1) and 4-6 months post-evaluation (T2). Care coordinator findings demonstrated that over 85% of family goals focused on understanding the child's diagnosis, getting needed interventions and educational support, and accessing healthcare financing programs. More than half of care coordination activities were spent on engaging and educating the family; similarly, the most time-consuming care coordination efforts were in helping families understand their child's diagnosis and meeting family's basic needs. For those children referred to needed services, 54% were enrolled in one or more service at T2. Caregivers in both the CC and CAU groups reported an increase in stress related to interactions with their child as well as increased empowerment from T1 to T2. Contrary to our hypotheses, there were no significant group-by-time interactions across caregiver-report measures. While these findings further our understanding of care coordination delivery, they diverge from previous evidence demonstrating care coordination efficacy. This study paves the way for future opportunities to evaluate what kinds of care coordination supports family need at varying times in their child's healthcare journey and how the outcomes important to all stakeholders are measured to reflect true evaluation of efficacy.

A Statewide Tiered System for Screening and Diagnosis of Autism Spectrum Disorder.

Although autism spectrum disorder (ASD) can be reliably detected in the second year of life, the average age of diagnosis is 4 to 5 years. Limitations in access to timely ASD diagnostic evaluations delay enrollment in interventions known to improve developmental outcomes. As such, developing and testing streamlined methods for ASD diagnosis is a public health and research priority. In this report, we describe the Early Autism Evaluation (EAE) Hub system, a statewide initiative for ASD screening and diagnosis in the primary care setting. Development of the EAE Hub system involved geographically targeted provision of developmental screening technical assistance to primary care, community outreach, and training primary care clinicians in ASD evaluation. At the EAE Hubs, a standard clinical pathway was implemented for evaluation of children, ages 18 to 48 months, at risk for ASD. From 2012 to 2018, 2076 children were evaluated (mean age: 30 months; median evaluation wait time: 62 days), and 33% of children received a diagnosis of ASD. Our findings suggest that developing a tiered system of developmental screening and early ASD evaluation is feasible in a geographic region facing health care access problems. Through targeted delivery of education, outreach, and intensive practice-based training, large numbers of young children at risk for ASD can be identified, referred, and evaluated in the local primary care setting. The EAE Hub model has potential for dissemination to other states facing similar neurodevelopmental health care system burdens. Implementation lessons learned and key system successes, challenges, and future directions are reviewed.

Social complexity negatively influences lung function in cystic fibrosis after transfer to adult care.

BACKGROUND: Several nongenetic factors, such as socioeconomic status, environmental exposures, and adherence have been described to have an impact on outcomes in cystic fibrosis (CF). OBJECTIVE: To determine the effect of social complexity on the % predicted forced expiratory volume (ppFEV1 ) before and after transfer to adult care among adolescents with CF. METHODS: Retrospective, single center, cohort study included all patients with CF who were transitioned into adult care between 2005 and 2015 at Indiana University. Social complexity (Bob's level of social support, [BLSS]) was collected at transfer. Linear mixed regression models assessed the relationship between ppFEV1 decline over time and BLSS with other covariates. RESULTS: The median age of the patients (N = 133) at the time of transfer was 20 years (interquartile range: 19-23). Overall, there was a decline in lung function over time in our population (ppFEV1 at 24 months pretransfer 77 ± 20%, ppFEV1 at 24 months, posttransfer 66 ± 24%; P < .001). The relationship between BLSS and ppFEV1 became more negative over time, even after adjusting for other covariates. CONCLUSION: Social complexity is strongly associated with lung function decline after transfer to adult care.

A Health Care Transition Curriculum for Primary Care Residents: Identifying Goals and Objectives.

BACKGROUND AND OBJECTIVES: The transition from pediatric to adult health care is a vulnerable period for youth with special health care needs. Although successful transitions are recognized as critical for improving adult outcomes and reducing health care utilization and cost, an educational gap in health care transitions for physicians persists. Our aim with this project was to develop a national health care transition residency curriculum for primary care physicians, using an expert-based, consensus-building process. METHODS: Medical professionals with expertise in health care transition were recruited to participate in a survey to assist in the development of a health care transition curriculum for primary care physicians. By using a modified Delphi process, curricular goals and objectives were drafted, and participants rated the importance of each objective, feasibility of developing activities for objectives, and appropriateness of objectives for specified learners. Mean and SDs for each response and percent rating for the appropriateness of each objective were calculated. RESULTS: Fifty-six of 246 possible respondents participated in round 1 of ratings and 36 (64%) participated in the second round. Five goals with 32 associated objectives were identified. Twenty-five of the 32 objectives (78%) were rated as being appropriate for "proficient" learners, with 7 objectives rated as "expert." Three objectives were added to map onto the Got Transition guidelines. CONCLUSIONS: The identified goals and objectives provide the foundation and structure for future curriculum development, facilitating the sharing of curricular activities and evaluation tools across programs by faculty with a range of expertise.

Impact of social complexity on outcomes in cystic fibrosis after transfer to adult care.

OBJECTIVE: This study evaluates the roles of medical and social complexity in health care use outcomes in cystic fibrosis (CF) after transfer from pediatric to adult care. METHODS: Retrospective cohort design included patients with CF who were transitioned into adult care at Indiana University from 2005 to 2015. Predictor variables included demographic and comorbidity data, age at transition, treatment complexity score (TCS), and an objective scoring measure of their social complexity (Bob's Level of Social Support, BLSS). Outcome variables included outpatient visit rates and hospitalization rates. Pearson's correlations and linear regression were used to analyze the data. RESULTS: The median age of the patients (N = 133) at the time of transition was 20 (IQR 19-23) years. The mean FEV1 % predicted at transition was 69 ± 24%. TCS correlated with outpatient visit rates (r = 0.3, P = 0.003), as well as hospitalization rates (r = 0.4, P < 0.001); while the BLSS only correlated with hospitalization rates (r = 0.7, P < 0.001). After adjusting for covariates, the strongest predictors of post-transfer hospitalizations are BLSS (P < 0.0001) and pre-transfer hospitalization rate (P < 0.0001). CONCLUSION: Greater treatment complexity is associated with greater healthcare utilization overall, while greater social complexity is associated with increased hospitalizations (but not outpatient visits). Screening young adults for social complexity may identify high-risk subpopulations and allow for patient centered interventions to support them and prevent avoidable health care use.

The neurologist's role in supporting transition to adult health care: A consensus statement.

The child neurologist has a critical role in planning and coordinating the successful transition from the pediatric to adult health care system for youth with neurologic conditions. Leadership in appropriately planning a youth's transition and in care coordination among health care, educational, vocational, and community services providers may assist in preventing gaps in care, delayed entry into the adult care system, and/or health crises for their adolescent patients. Youth whose neurologic conditions result in cognitive or physical disability and their families may need additional support during this transition, given the legal and financial considerations that may be required. Eight common principles that define the child neurologist's role in a successful transition process have been outlined by a multidisciplinary panel convened by the Child Neurology Foundation are introduced and described. The authors of this consensus statement recognize the current paucity of evidence for successful transition models and outline areas for future consideration.

Implementation of a Transdisciplinary Team for the Transition Support of Medically and Socially Complex Youth.

PURPOSE: This article reports the ongoing work of a statewide transition support program which serves youth ages 11 to 22 with medically complex conditions and socially complex lives. METHODS: Seven years of transition support services have led to program evolution demonstrated via a descriptive summary of the patients along with both families' and primary care providers' responses to satisfaction surveys. An illustrative case is used to highlight the types of expertise needed in specialized transition service delivery for patients with significant complexity. The team's analysis of their transdisciplinary work processes further explains the work. RESULTS: Nearly three hundred youth with complex needs are served yearly. Families and primary care providers express high satisfaction with the support of the services. The case example shows the broad array of transition-specific services engaged beyond the usual skill set of pediatric or adult care coordination teams. Transdisciplinary team uses skills in collaboration, support, learning, and compromise within a trusting and respectful environment. They describe the shared responsibility and continuous learning of the whole team. CONCLUSIONS: Youth with complex medical conditions and complex social situations are at higher risk for problems during transition. Serving this population with a transdisciplinary model is time consuming and requires advanced expertise but, with those investments, we can meet the expectations of the youth, their families and primary care providers. Successful transdisciplinary teamwork requires sustained and focused investment. Further work is needed to describe the complexity of this service delivery along with distinct transition outcomes and costs comparisons.

Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities.

PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction.

Methods and effects of a case-based pediatric gastroenterology online curriculum.

OBJECTIVES: Asynchronous learning, using Web-based instruction, is developing a growing role in medical education. Restrictions on resident work hours continue to require restructuring of formal educational activities in many programs. The objectives of this curriculum development project was to determine whether using blended learning with case-based online modules supplemented by faculty-facilitated case discussion was effective and well received. METHODS: The pediatric gastroenterology curriculum, completed during a 4-week subspecialty rotation, consists of 8 case-based online modules and four 1-hour didactic sessions. The curriculum was pilot tested using a 1-group, pretest/posttest design as well as a survey to assess both knowledge acquisition and learner satisfaction. Resident evaluations of the rotation were examined during a 4-year pre- and postimplementation period. RESULTS: Twenty-one learners participated in pilot testing of the curriculum. After completing the curriculum, there was a significant improvement in post-test medical knowledge scores (pretest 73%, posttest 92%, P < 0.001). The satisfaction survey showed that learners were highly satisfied with the course format, and this teaching method was actually preferred to more traditional methods of teaching. Pilot learners reported increased comfort in caring for patients with gastrointestinal complaints. Evaluations of the gastroenterology rotation improved significantly across multiple domains in the years after implementation of the curriculum. CONCLUSIONS: This curriculum, which uses online teaching reinforced by faculty-facilitated case discussion, was both effective and well received by learners. The implementation of this curriculum appears to have had sustained beneficial effects on the learning environment beyond the simple acquisition of medical knowledge.

Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program.

PURPOSE: To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program. METHODS: A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005-2006 National Survey of Children with Special Health Care Needs. RESULTS: Forty-four percent of surveys were returned. Average age of youth was 17.5 (11-22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005-2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%). CONCLUSIONS: Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.